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Palliative Care End of Life and More. Palliative care aims to relieve suffering and improve the quality of living and dying. Palliative is from the Greek word “to cloak”. Palliative Care: Some Definitions

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Palliative Care

End of Life and More


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Palliative care aims to relieve suffering and improve the quality of living and dying.

Palliative is from the Greek word “to cloak”


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  • Palliative Care: Some Definitions quality of living and dying.

  • The study and management of patients with active, progressive, far-advanced disease for whom prognosis is limited and the focus of care is quality of life (QOL) (British Board of Medical Specialties, 1987)


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  • Active, total care of patients whose disease is not responsive to curative treatment.

  • Control of pain, other symptoms, psychological, social spiritual problems is paramount.

  • The goal is the achievement of the best possible QOL for patients and their families.


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Myths and Misconceptions in the course of illness, in conjunction with anti (cancer) treatment. (WHO, 1990)

Palliative care is end-of-life care only

Palliative care is doing nothing

Palliative care starts when curative treatment stops

Palliative care is new-age “kumbayah”


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Myths and in the course of illness, in conjunction with anti (cancer) treatment. (WHO, 1990)Misconceptions

Palliative care means that medical care has failed

Palliative care is a nice but not necessary addition to health care

Palliative care can only be implemented by physicians and nurses with specialty credentials


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Center to Advance Palliative Care 2000


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  • Palliative care aims to address: living with, or at risk of developing a life-threatening illness

    • physical, psychological, social, spiritual and practical expectations and needs

    • Suffering

    • loss, grief and bereavement

    • preparation for, and management of, self-determined life closure, the dying process, and death

Center to Advance Palliative Care 2000


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Palliative care is most effectively delivered by an interdisciplinary team.

Palliative care may complement and enhance disease-modifying therapy, or it may become the total focus of care.

Palliative care may also be applicable to patients and families experiencing acute illness and/or chronic illness.


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Distinction: Palliative Care and Hospice interdisciplinary team.

Palliative care addresses the physical, psychosocial, and spiritual needs and expectations of patients with acute or chronic illness at any time during that illness—even if life expectancies extend to years.

Hospice care is a palliative care “package”provided to patients who have a life expectancy of less than 6 months if the disease runs its usual course, in the judgment of the patient's attending physician and the hospice medical director. Medical intervention is limited.


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  • Death in America Today interdisciplinary team.

    Modern health care

    • only a few cures

    • live much longer with chronic illness

    • dying process also prolonged


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  • Protracted Life-Threatening Illness interdisciplinary team.

    > 90%

    • predictable steady decline with a relatively short “terminal” phase

      • cancer

    • slow decline punctuated by periodic crises

      • CHF, emphysema, Alzheimer’s-type dementia


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Steady Decline, Short Terminal Phase interdisciplinary team.

cancer


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Slow Decline, Periodic Crises, Sudden Death interdisciplinary team.

CHF, emphysema, Alzheimer’s-type dementia


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The Cure - Care Model: interdisciplinary team. The old system

D

E

A

T

H

Life Prolonging Care

Palliative/

Hospice

Care

Disease Progression


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Palliative Care’s Place in the Course of Illness interdisciplinary team.

Life Prolonging Therapy

Death

Diagnosis of serious illness

Palliative Care

Medicare Hospice Benefit


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Common Issues interdisciplinary team.

  • Need for patient and family-centered care and continuity

  • Need for clear Treatment Options & Prognosis information

  • Need to address grief and loss associated with deterioration, decisions and death

  • Need for recognition and rx of depression

  • Need for  community resources, support

  • Need for improved research on palliation


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Last Acts Report Card, Texas Specific Data interdisciplinary team.

  • < 25% of Texans die at home (85-90% state preference to die at home) (D)

  • Pain laws interfere with pain relief (D)

  • Hospital-based services (“E”)

    • 31 % of hospitals have pain service

    • 11% have hospice services

    • 9% have palliative services

  • 28% of patients >65 who died received hospice care (C)

  • Avg hospice LOS is 25 days (optimal LOS= 60 days) (D)


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Death in the hospital: interdisciplinary team. What do we know about it?

  • Physical suffering

  • Poor to non-existent communication about the goals of medical care

  • Lack of concordance of care with patient and family preferences

  • Huge financial, physical, and emotional burdens on family caregivers

  • Suffering in professional caregivers

  • Fiscal impact on hospitals


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National data on the experience of dying in 5 tertiary care teaching hospitals

The SUPPORT Study

  • Controlled trial to improve care of seriously ill patients

  • Multi-center study funded by RWJ

  • 9000 patients with life threatening illness, 50% died within 6 months of entry


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SUPPORT: Phase I Results teaching hospitals

  • 46% of DNR orders were written within 2 days of death.

  • Of patients preferring DNR, <50% of their MDs were aware of their wishes.

  • 38% of those who died spent >10 days in ICU.

  • Half of patients had moderate-severe pain >50% of last 3 days of life.


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Pain data from SUPPORT teaching hospitals

% of 5176 patients reporting moderate to severe pain between days 8-12 of hospitalization:

colon cancer 60%

liver failure 60%

lung cancer 57%

MOSF + cancer 53%

MOSF + sepsis 52%

COPD 44%

CHF 43%

Desbiens & Wu. JAGS 2000;48:S183-186.


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CPR Data teaching hospitals

  • 133/ 209 patients who died in CCU over 18 months received CPR

  • 133 patients underwent 172 episodes of CPR

  • One episode was > 2 hours; 5 were > 1 hour; national recommendations are 10-20 minutes

  • 16 patients survived; no patient who underwent CPR > 1 time survived


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  • Frequency and duration of CPR teaching hospitals

    • Implement scoring systems to assist us to recognize patients who will not benefit from CPR

    • Implement communication tools and mentoring to assist in these difficult communications

    • Educate about advance directives laws and professional responsibility and liability


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Tiffany teaching hospitals

  • Suffering (pain, emotional, spiritual, other)

  • No one knew who she was, what

  • No one knew what she wanted (no goals of care, advance directive)

  • Communication issues

  • Futile treatments- CPR

  • Dignity issues


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MISSION teaching hospitals

The mission of The Methodist Hospital’s Pain and Palliative Care at Program and Supportive Care Consultation Service is to enhance the quality of life for patients and their families by the prevention and relief of suffering, through attention to physical, emotional, social, and spiritual concerns associated with illness or injury.


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Goals of Palliative Care at TMH teaching hospitals

  • Fully integrate evidenced-based symptom management and palliative care into the care delivery system, and incorporate into the plan of care for every patient.

  • 2. Ensure optimum comfort to every patient through the facilitation of aggressive pain and symptom management.

  • 3. Ensure that the patient and family goals of care, wishes, and advanced directives are elicited, incorporated into the plan of care, and carried out.


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  • Facilitate programs and systems that address the spiritual, emotional, and psychosocial comfort of patients and families

  • Assist members of the medical, nursing, and support staff to in becoming knowledgeable about about palliative care/symptom management, and competent in associated skills.

  • Contribute measurably to increased patient, family, and staff satisfaction.

  • 7. Contribute measurably to reductions in the cost of care, length of stay, and mortality rate.


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Palliative Care at The Methodist Hospital emotional, and psychosocial comfort of patients and families

  • Education

  • Staff and Physician Education

  • Patient and Family Education

  • Community Education


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  • Clinical Consultation Service emotional, and psychosocial comfort of patients and families

  • Spiritual and Bereavement Care

  • Clinical Care Coordination

  • Research and Outcome Measures

  • Funding and Development


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Edmonton Symptom Assessment Scale (ESAS Numerical Scale) emotional, and psychosocial comfort of patients and families

Please circle the number that best describes:

No Pain 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Pain

Not Tired 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Tiredness

Not Nauseated 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Nausea

Not Depressed 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Depression

Not Anxious 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Anxiety

Not Drowsy 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Drowsiness

Best Appetite 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Appetite

Best Feeling of Well being 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Feeling

No Shortness of Breath 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Shortness of Breath

Other Problem 0 1 2 3 4 5 6 7 8 9 10


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A Palliative Care Story emotional, and psychosocial comfort of patients and families

Patient Mrs. K 50 years old

126 days in the hospital

CA and multiple medical problems

Severe neuropathic pain from herpetic lesions in groin

High-dose opioids causing problems, but no relief

Liver problems/jaundice from TPN

Feculent vomiting, hasn’t eaten in weeks

Physicians said “there’s nothing more we can do”


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Palliative Care Consultation for Mrs. K emotional, and psychosocial comfort of patients and families

Spending as much time as necessary to find out who she is and what she wants

Rigorous symptom and pain assessment

“Moving mountains” to get IV methadone

Symptom (nausea/vomiting) management

Withdrawing unnecessary/unwanted treatment


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Results of Palliative Care Consultation/Interventions emotional, and psychosocial comfort of patients and families

Pain relief

Relief from nausea/vomiting

From NPO to clear liquids to fried chicken in just a few days

TPN discontinued

Went to hospital beauty parlor for to have hair done

Discharged after 141 days in hospital

Died peacefully at home ten days after discharge


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There is never “nothing more we can do”. emotional, and psychosocial comfort of patients and families


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“You matter because you are you. You matter to the last moment of your life, and we will do all we can not only to help you die peacefully, but to help you live until you die.”

Cicely Saunders, RN, SW, MD

Founder, Modern Hospice Movement


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